~ Sharing My Story, So We Can Each Edit Our Own

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CJD Information

Creutzfeldt-Jakob Disease (CJD) is an extremely rare, fatal brain disease. There is no cure. There is no treatment. There are also myths attached to CJD, mostly because so little is known about the disease. But there are research teams dedicated to CJD, which we are very grateful for.

The most common myth is that CJD is Mad Cow Disease. Someone who was disputing this myth said to me “Humans don’t get Mad Cow Disease. Cows get Mad Cow Disease. ” Which is so true. The reasoning behind this myth is complicated. The first way that this idea can become skewed, is that both Mad Cow Disease, or Bovine Spongiform Encephalopathy (BSE), and CJD are prion diseases.

Prion diseases occur when the normal proteins in the brain become abnormal and start attacking various parts of the brain, until death occurs. Prion diseases can occur in all sort of mammals, such as humans (CJD), cows (BSE), sheep, deer, etc. However a human would not have BSE, they would have CJD.

The second way this myth can generate is that there are various forms of CJD, one being variant CJD, which is the type of CJD that does occur in humans after ingestion of a sick animal. However, there has been only once case of variant CJD in Canada since the government started tracking CJD since 1997.

So hopefully through this website and sharing Anne-Marie’s story, the truths about CJD can be shared and communities educated.

Anne-Marie has been diagnosed with sporadic CJD, which means that the disease just happens and the medical community does not have any reasoning as to why the first protein becomes abnormal. I could type and type about mom and CJD, but instead there is a fantastic website for the CJD Foundation. www.cjdfoundation.org This Foundation is dedicated to educating about the disease, as well as providing support and information to families and friends with loved ones diagnosed with the disease. Another fantastic resource is through the Public Health Agency of Canada, http://www.phac-aspc.gc.ca/hcai-iamss/cjd-mcj/cjd-eng.php A resource for bilingual information on CJD can be found at the Alzheimer Society of Canada, http://www.alzheimer.ca/ Please feel free to contact these organizations, or me, if you have any questions about CJD or Anne-Marie’s diagnosis.

Also, if any medical professionals have read this and feel that my information is incorrect, please contact me so I can ensure that all information presented in this site is accurate.